Braska Bear

Mommy got me this doll for Christmas, and she’s been sitting in the play room mostly.  But today, I decided to give her a cuddle, and guess what??  She’s pretty fun to play with!  Now KiKi and I are playing with them a lot!  We got dressed and went to the eye doctor so he could check my eyes after my last surgery. We like to play a little while we wait for him. He said I’m pretty fixed up, so no more surgeries for a while.  Good news! We always like to look at the fountain by the doctor’s office.  Daddy surprised us by coming to the doctor’s office too.  He works really close to there.  He waited with KiKi for me and Mommy to talk to the doctor.

I'm still feeling pretty good.  The red in my eyes is still pretty icky, but it doesn't bother me too much.  I like to put my face in my pillow really hard, and Mommy says she doesn't like that. Guess I'll have to save that kind of silly play for later. I don't like when Mommy and Daddy have to put my gooey medicine in my eyes. It makes things all blurry. But it doesn't hurt. KiKi was real hot today. She didn't feel good. Hopefully I won't get her temperature. That wouldn't be good for me right now.

(Is it too late for a graphic image warning?) My eyes are still trying to get better.  But I feel pretty good.  Today Mommy had to tell me to stop playing so silly and rough a few times.  I am supposed to rest for a few more days to make sure my eyes don't get bumped or dirty or anything. And I'm staying home so I don't get around people who might have germs.  It's hard to be still when its more fun to play with my sister. So don't worry about me, just keep praying that my eyes get better quick!

She is resting well, so far the post anesthesia time has been very calm. So thankful for all the prayers.

All went well, she is one groggy little girl, but Daddy is on cuddle duty.

Here we are again.  I know all these people. They have worked on me lots of times.  They are really nice, so that's the best part. (Mommy says the best part is that they are so good at what they do... But they are nice too!) Soon I will be taking a little nap... Mommy will let u know how it goes. She also puts notes up at www.Twitter.com/mom2braskakiki if you want to see more pictures.

That’s what we are.  Goofy.  Especially when Mommy wants to take cute Valentine’s Day pictures.  Tomorrow is when I go back to the hospital to get my eyes fixed again.  It’s so that I don’t have to look at things sideways, like this. I’m supposed to be there right after lunchtime.  So I’ll let you know how it goes, or maybe Mommy will if I’m not feeling very good.  Sometimes I feel kind of funny for a while after they do this.  It’s not fun.  But Mommy says it will help me, so I’ll try to do my best. And I always make the doctors and nurses smile when I get silly and extra cute just for them.  A little cute never hurts, right?

Wow. What a busy day we had!! First I went to school.  Mommy and KiKi went to the Y for exercise and Y-School but then they came back for my special snack time with Miss J and Miss S.  And Miss C was there today too. She checks on how big I am and if I’m eating healthy things to make me grow.  Today I wasn’t bigger. I was smaller again.  BUT—I was taller.  So I have to start eating things that will help me get bigger to go with my taller-ness.  (Mommy note: Stats today—26 lbs, 37.75 inches.) After school, we went home for a quick lunch and went to the eye doctor.  It was time for my check-up to see how my eyes were doing. This time I decided I wanted to sit in the big chair myself.  Mommy was really surprised, but I’m 5 now… I can do lots of things myself!  The first doctor looked at my eyes with some lights and showed me a little movie. Then the first doctor put drops in my eyes and then sent me back out to wait a little mo...

It was a long day.  I slept for most of it though. And now I’m ready for sleep again. You can read the stories before this one to see how things went for me today.  And Mommy might talk some more about it over on her page later too.  But this is how I was when I left the hospital. Looks a little weird. That’s what KiKi said. I slept most of the day after we got home.  Tonight I got up and played a little for about an hour, and I felt pretty good.  But I was asleep again pretty soon. I’m glad it’s bedtime.  I’m ready to see if tomorrow is a little better.

October is Down Syndrome Awareness Month. So we’ll highlight a few little special things about what DS means in our house. [I have Down syndrome. I have lots of stuff that happens every week. Sometimes TOO much!] Tomorrow is a special day at our house… anyone know why? Plus the Bears and Cardinals won, so yay! Then Wednesday is when I have more fixing done on my eyes at the hospital.  And the rest of the week I’ll be resting. So tonight, I’m sleeping plenty. 

Yes, I’m ready to say I’m counting now.  Days tube-free. THREE. Actually, close to 4…her last tube feed was Tuesday breakfast. But let’s not get too picky. I’ll just count full days.  Pardon my excitement. She did great again today.  Though she did fight a little this morning in both eating and drinking.  Just was in a grouchy mood for a while.  But we managed. We took breaks and she got it all in. Daddy even covered a big part of that tonight… so it’s now a team effort, and that’s good.  Her total today was about 21 oz today, I think.  Possibly a bit more.  Go Braska! Also today we had her 3-month check up from her May strabismus surgery.  Her results have been great, and we are all pleased.  In that time, though, her tip/tilt has become more consistent and defined.  This was kind of expected, in that when we fixed the crossing issue, the true nature of her nystagmus issues and the related accommodations showed up.  This...

Just a quick note for those of you who have been wondering how the eyes are doing postop.  Bottom line: She’s doing great. She is a champ and the recovery was really SO much better than I expected.  We have had no glitches in the postop process  There was a moment on Saturday evening when we thought there might be some concern, when she had some goo coming from the eyes that was very abnormal.  But with a couple days more of the antibacterial ointment, she was all good.  There is a little redness still there, but that’s within the range of normal for this point in recovery. We’re seeing some much better alignment with the crossing issue, and she seems to be more comfortable in general, especially asking for her glasses when they’re not on.  The head tilt to the side is still there, but we hope she re-learns proper posture as her brain and eye muscles heal to their new normal.  The chin-up tip is still very there… we’ll probably be addressing that...

Today was full of lots of different things… First, we got up and had breakfast with Mommy. Daddy is on a trip to play games with his friends, so it’s just us girls hanging out. Then Mommy did some cleaning and me and KiKi played a lot and made more big messes. Then Mommy had to go to work, so Auntie Rachel came to play with us for a while. We ate lunch, and we played, and then we took naps. When Mommy got home, KiKi and Auntie Rach left to go to a party. KiKi’s going to stay in her room at their house tonight. So me and Mommy decided we would go out just us! We went to a place close to our house that has lots and lots and lots of food. I like it because it has so much to look at and there are people all over the place. We got to sit in a little seat in the corner, so we played a little while Mommy ate her dinner. First I did my flashcards… Then we took some pictures, but I was being goofy and didn’t want to say cheese nicely. Then we watched a little bit ...

I am at the doctor's office again today so he can see how my eyes are getting better after he fixed them last week.  I hope he likes how they look!

I’m feeling pretty good.  My hurts are not too much anymore.  Sometimes my eyes feel itchy and Mommy makes me keep my hands out even though I want to rub my eyes to make them feel better.  The funny red stuff in my eyes is getting a little better, too. Thanks to all you nice people who have been asking how I’m doing.  I have to stay home mostly still, but I’m playing and doing more around the house.  Grammy has been here helping me for a couple days and Grandma C is coming later today.  It’s not fun to have eyes that are itchy and red, but it’s nice to get to see my grandmas! (Mommy note: She’s doing really well.  She’s not 100%, but she’s much closer to it than I would have ever thought she’d be at this point.  I’m really thankful that it has gone so well so far, and I’m very aware of the role that all your prayers have played in her progress.  Big thanks to our family members who have given their time to help physically, money for...

(Mommy note: She’s still in… just thought I’d share a few more cute pre-op pics. To keep you busy, Grandma C. *wink*)

I got to put on great big pajamas with fishes on them. And I’m working on my letter beads.  Everyone is so nice, and they think I’m pretty funny.  I’ve been really silly this morning because I got up so early. (Mommy note: They took her back about 8:20am. She was the first case this morning, and we expect to hear from them in about another 20 to 30 minutes. She was in great spirits so far, and we are hopeful that the procedure and recovery will go as smoothly.  So many of you have been sending notes and texts letting us know that you’re praying. We do not take that for granted, and please know that we appreciate them very much.  God is good and he will care for our girl, no matter what.  I’ll update more when we can.)

I'm at the eye doctor again today. Its a different one though. I saw one guy already and he ckecked my eyes and put some drops in there. I didn't like that at all. Now I'm waiting for the next guy. But at least I can play a little.

I had a pretty good appointment today at Dr. C’s office. We had to wait a little bit, but it wasn’t too bad. I found some fun things to do in the meantime. I even met some new really cute baby friends. They’re “extra” special like me. It’s always fun to meet pretty babies when we go to the kid’s hospital. Then we went back and talked to Dr. C. Mommy will explain more about all that big-people talk on her page . All I know is that I get to go to another doctor on Monday. Mommy says he might be able to help my eyes work better. I sat all by myself in the big chair today. Dr. C and the other doctor who came to learn from her thought I did great. KiKi got to play with Uncle Patrick at his house while I was at the doctor. They had so much fun she got mad when we got there to pick her up! She is SO crazy sometimes. But I’m glad she had fun! After the doctor appointment, we picked up KiKi and we went to see Grandma C and PaPaw for lunch, and Daddy was there too since...